I need your help. In 1977, I had a brother that died from a pituitary disease that did not produce salt. This is the story that my dad told me. My brother was 1 years old when he died. My dad could not remember the name of the disease. My mom died 8 years after my brother so I could not ask her. I tried google and had no luck. If you have heard of this disease, please give me the name of it so that I can make the rest of my family aware. I thank you in advance.
It could be a couple of things. Adrenal Insufficiency from a pituitary tumor causing low ACTH also called Secondary Addison's (pituitary source) and he died from an acute crisis. A crisis happens when sodium drops and most often potassium spikes and you can die when that happens. There could have also had been a problem with the renin/aldosteone hormones - they actually regulate sodium and potassium.
If the Addison's was adrenal source, that can run in the family as that is more often an auto-immune issue. Doctor's don't feel that pituitary lesions run in families but I have to say that at least in some families that I know, it can happen but it is not common.
If you have a lot of auto-immune disease running in your family, your doctor should be made aware. As a family member you should be able to get a copy of his death certificate to see his cause of death (although at times that information is not always correct). I am sorry for your loss. I am only a patient myself - but this is my best guess and having almost died of low sodium myself - I have a pretty good idea this is Addison's or related.
Thank you so much and I will get his death certificate. I hope that you have stabalized and are able to keep your sodium levels under control. I will post what the certificate said and I would like for you to keep us posted on your illness as well.
I had my adrenals removed due to Cushing's disease which is too much cortisol. In my case I had low renin as well (which caused low sodium) which is not the norm with high cortisol, but can happen.
I take a medication to retain sodium as well as salt pills daily and salt my food in ways that may horrify most people that have to avoid salt but I need it! In that way, I keep my sodium normal. During the summer and if I happen to sweat a lot, I have to increase sodium intake, like anyone with a salt wasting disease.
I hope you get useful information off the certificate. I do hope that you update us.
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